Looks like No Fusion for me NCC

December 15, 2008

First, I'd like to hear from any of you who cannot get a fusion at

all due to osteoporosis, and who have severe CCI or FCSettling.

How are you doing? How long have you been living with the severe

instability? Does it just continue to get worse and worse?

It looks like I won't be getting my fusion I'd so hoped for. I

underwent 18 months of IV drip pamidronate therapy, had a bone scan

Jan. 08, and just had another one and unbelievably, I have lost 8% of

my bone density! I knew my fusion would depend on good results of

the bone scan, which I obviously did not get. It looks like I'll have

to live with this, even though I've been getting new symptoms and the

old ones are worsening (in quantity, quality or both). I can do less

and less.

I had built up so much hope that I could someday have a more normal

life, I could drive again, and we could travel. This news was very

crushing to me, but I'm doing better now.

I am hoping to see a specialist in Portland that one of our

members/moderators told me about, perhaps he will have something

better for me. It's hard to believe anyone could lose 8% of bone mass

in less than a year, when the last scan actually had shown

improvement. Maybe the last scan was no good, I don't know. Has

anyone heard of anyone losing bone density like that, that fast?

Yes, I take calcium and Vit. D, and I have taken Actonel for 5 years,

too. I try to be outside each sunny day as much as possible, I can't

weight lift or -train due to my instability, though. And my level of

activity has gone way down due to sx and pain, so maybe that was it.

Just thought I'd give you an update, my fusion is no

longer " upcoming. "

;-(

Virginia

4 plc fracture of the C1; Tethered Cord; " acquired chiari " (not

ACM), 5.7 mm, resolved by SFT; Atlanto-Occipital Dislocation, mild

Scoliosis, and " severe " Functional Cranial Settling all due to

equestrian accident, 2004. TC surgery, Nov. 2007 at TCI. CC Fusion

(not) upcoming.

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